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The end came early on Christmas Eve morn, around 2:30. The doctor who called said my husband had passed quietly, peacefully. He’d waited, as I hoped he would, for his sister to arrive from out of state. We rushed to visit with him late Friday night, fearing if we waited until Saturday morning, he’d be gone. It was a good thing we didn’t wait.

Only last Sunday, he was lucid and, though fixated on coming home, feeling good enough to swing his legs over the side of the bed and sit up. Determination shined in his eyes, his pursed lips, as he tried to hold himself upright.

“I want to come home.”

I explained I couldn’t care for him home. Not yet. He was still connected to fluids, and antibiotics, and other drugs that now, only a week later, I can no longer name.

Some time between Sunday and Monday morning, his body collapsed. He was unconscious, was having trouble breathing. His organs were shutting down. Doctors said this was the end, gave him morphine to ease his struggle, and announced that death was imminent.

Evidently, science can’t quite quantify imminence, certainly not in a man who was determined not to die, who never sat still in his life, and whose heart was strong.

Released from all medications save the morphine drip that kept him comfortable, he existed in an unconscious twilight for five days, never awakening, until early on Saturday, Christmas Eve. He no longer looked like himself, gaunt to the point of skeletal, a bony nose so unlike his prominent one, sunken eyes even in sleep, cheek and temple bones glaringly evident, all subcutaneous padding gone.

I only feel relief. Part of it is for me, for the stress has been immense. But the vast majority of it is for him, for freedom from his struggles this past year, from his determination to go forward despite the pain, despite the indignities his body heaped upon him. I will forever remember his smile and laughter, and his industry surrounds me in a beautiful kitchen, perfectly detailed book cases, well laid tiles, but this year has given me other snapshots burned into my memory, ones I’ll never forget–of a starving man staring at dinner he wanted so badly but couldn’t bear to eat for the pain he’d feel afterward, of the man’s humiliation at having to defecate in a bucket in the yard because he couldn’t make it inside to the bathroom.

As he lay in his bed, comatose, I told him he could go, that his parents were waiting for him, that all of his dogs, his cats, were waiting to play and cuddle with him. I knew he didn’t want to die. He wasn’t ready, but I wanted him to know the others who went before him were there for him, waiting, loving.

Last Thursday morning, December 1, I tried to wake my husband so he could prepare for his oncology appointment. I couldn’t. He wasn’t dead. No, he was snoring away on the couch, but completely unconscious. I shook him and yelled at him, but he never even flinched.

This was an almost unbelievable 180 degree turn from the day before, when he’d raced across the house on his walker so that the physical therapist could gauge his fitness, ate dinner, and talked with friends. It seemed he was, all things considered, in good working order.

Shocked and incredulous, I called our village police, who came, emergency ambulance in tow, and carted my husband off to the hospital. By the time I got there about 20 minutes later–after shutting off the coffee, giving directions to my adorable neighbor who’d take care of the dogs until I returned–ER had taken blood, knew he was running 102 fever and from the chest congestion, began treatment for pneumonia.

Later that day he was admitted and placed in a telemetry room, then, overnight, moved to the pulmonary unit as he had bi-lateral or double pneumonia. Day by day, a new issue presented itself. He wasn’t eating. The bi-pap mask dried out his mouth and throat. He couldn’t swallow. He couldn’t bring up gas. He wasn’t eating. Drinking was also a problem. Every sip–juice, milk, grapeade, water–burned his tongue.

After seven days, his doctor, who’d kept me abreast of my husband’s condition all the while, began to prepare me for what could be the end. The antibiotics course of treatment had finished, infection was controlled, but my husband wasn’t showing signs of progress or recuperation. Edema swelled one arm and both legs so he looked like a 300 lb man. He dozed mostly, wasn’t responsive to questions 90% of the time, and hallucinated. Doctor wasn’t sure what was causing this. It could be the cancer, or his very weakened physical state. There was fluid around his lungs and heart, and his kidneys weren’t functioning well–lack of oxygen, perhaps. Something else was contributing to the symptoms my husband was presenting, and doctor had every intention of finding out what those causes were, but he still felt I should be prepared.

And so today we had “the talk.” Patient would be made comfortable, his pain (if any) would be controlled. He could spend time with his family, etc. When the staff had exhausted all efforts to identify and control issues that contributed to my husband’s declining state, he would be moved to a palliative care facility where continued oversight and care were available.

But not yet. Doctor was hunting for causes, for anything that would give my husband better opportunities for the future. To help the edema, he is being given Lasix, which reduces the fluids in the body. A venous doppler echogram showed blood clots in both legs. He began Heparin treatment to thin the blood and hopefully dissolve the clots.

Daily, there are minor victories and defeats. Which side will win the battle only the Immortal Physician knows.

I go to hospital daily, in the morning. I am compelled to know how my husband is, and after knowing him since our college days, only setting my eyes on him will let me adjudge that. I ask questions of the nurse. I speak with his doctor. While I’m there, he has my undivided attention and all my energies. Still, I am no saint. When I leave–and I do after 2-3 hours–I feel relieved, I feel a great weight has been lifted from me. I run what errands I must, begin the round of texts that give family members and friends for their daily updates regarding my husband’s condition, and then I go home. It is my sanctuary, my refuge. My dogs are there. There’s a home to clean, chores to do. My mind often inserts bold questions as I work–if he dies, what about this or that? If he doesn’t die and remains an invalid, what then?What about his fish tanks? HIs car? Well, I’d drain the tanks and sell the car… but let’s not get ahead of ourselves. Still, these are paths my mind turns down.

The up and down nature of the disease and all additional complications infuriates me. I see how my husband suffers–not in pain, but in distress–unable to breathe easily, to be comfortable either in his swollen and emaciated skin or in his bed. I will not have him suffer pain. I will not. But what is the alternative?

The palliative care doctor shocked me when he said that my husband’s stage 3 cancer must be stage 4 by now, even as he admitted that no recent ct-scan had been taken. I was annoyed by his assumption, but I’ll save my energy for what’s to come, whatever it is.

Doctor feels we’ll have a clearer picture of the future in 3-4 days, just in time for our 46th wedding anniversary.

Today is Cyber-Saturday, not that I’m shopping. I’m at home, making sure my husband can get up–from whatever situation he’s in–when he needs to. He’s putting on weight. It’s harder to pull him to his feet, but there’s no muscle there, and he’s not helping to create it. He stubbornly refuses to exercise, so it was no surprise that on this past Monday, oncology appointment day, my husband said he was too weak to go. He just couldn’t get up.

I was insistent at first. We’d get a wheelchair at the center. You just have to walk to the car, I said. You can use your walker. But he’d have none of it.

But when I realized the tincture of opium responsible for successfully slowing his diarrhea was slowing him too, physically, I rescheduled for next week.

On Tuesday, I finally got one of the visiting nurses (there are two, one to flush his biliary stent, another the pic line) to understand how weak my husband was. He spoke to our physician’s assistant. Within a day, she called to say she’d schedule physical therapy. I asked for a better toilet seat–one with adjustable legs that would fit over our toilet bowl as my husband couldn’t lift himself from the one I’d bought, which already added 3 inches of height and had two raised arms for him to push off.

She agreed to seek that out as well. As we spoke, I was certain she was measuring my sanity and capabilities, especially when she said I was doing the job of five people. I was surprised at that, and, if I may be so bold, proud to be so recognized, but as she suggested home nursing for a few hours a day I realized she thought his care really was too much for me to handle, that I might be missing key clues to his condition that a trained eye would see quicker.

I agreed. Better care for him and a reprieve for me? Win. Win.

Especially as I’m a jinx. Yes… a jinx.

Last Saturday my husband, clad in sweats and no underwear, had a mega-accident. He struggled from the couch, and couldn’t move fast enough once on his feet to heed his body’s call, and capitulated to its explosive force there and then. Yes, clothing, socks, shoes, carpet and wood floor–and himself–all had to be cleaned. After caring for him, the carpet, floor, and couch, I bagged his clothes and took them outside, where I hosed out the solids and hung the clothes to drip. I wasn’t going to drag sodden clothes through the house to the laundry in the basement.

After an hour and a half’s work, all I could smell was, well, you know. I vented by texting his sister, who asked why he wasn’t wearing diapers? She’d told him to weeks ago. To be honest, the idea had never occurred to me, and even if I had thought of them, I’d have felt sorry for him–a blow to his masculinity and all–but now aware that HE knew and never said or did anything about it even after I’d cleaned him, the carpet, et al, I stormed into the den and thundered at him.

And went to buy him Depends. I refrained from calling them diapers, though clearly his sister had, and insisted he put them on. He employed one childish delaying tactic after another–would I get him a glass of ice; did I know where his phone was; his watch; bring him some watermelon.

And so it should come as no surprise to anyone who knows me that I lost it. I screamed like a lunatic that he’d put them on or I’d leave him to rot there… and then helped him off with his shoes and sweatpants, and on with the underwear and clothing again. <sigh>

Three hours later, he raced from den to bathroom on his walker. Didn’t quite make it. Another explosion painted the white bathroom–toilet, wall, floor. It was my fault, he said. I’d jinxed him making him wear the damned underwear. Yep. My fault.

Y’know? I wasn’t the slightest bit upset. It just struck me as absurdly funny; that for some reason, his accusation, failure to see the humiliating accident for what it was, was a very male thing to do. Even after cleaning him up, dressing him, and sanitizing the bathroom with Lysol while wearing rubber gloves, I was thankful for the Depends. A tile bathroom’s a lot easier to clean, Lysol’s easier on the olfactory senses, than well, again, you get the idea.

As I said yesterday, I wanted to compare what I’m going through with what i put Danny Ambrose, the female protagonist of my novel With Malice toward One, through.

The differences are easy to see. I am married. Danny was not when the disease reared its ugly head. I live with my husband. Danny and Alec were parted while she tried to finish with a messy divorce to be with Alec. I’ve been in this from the initial diagnosis. She was not. In fact, her lover, Alec Johnston, kept it from her as part of the difficulty in a long distance relationship. He had another, less altruistic reason, but I won’t spill the beans here.

The comparisons are easy as well. When Danny hears how mortally sick he is, she flies to him, worms her way into his life despite his best efforts to keep her at arm’s length, and stoically goes about doing whatever she can to make him live. She cooks things he can stomach and that taste good in an attempt to keep his strength and weight up. This is an issue I’m all too familiar with. Chemo–whether oral or IV–affects the way things taste. She forces him to observe the ‘civilized proprieties.’ Of course, she’s better at bullying him than I am, though it doesn’t always work. Again. Real life.

Without tearing his stare from the TV again, Alec slowly raised his hand and pointed vaguely to his chest and stomach area. There, on the dark red shirt he wore, I saw smudges of brown stroked about in an almost painterly fashion.

“If I doan’ want to bathe, I won’t.” Alec finally faced me head on. “And there’s nothing you can do about it.”

“No? We’ll see about tha–”

“I told ye there’s nothing here for ye, now get away!”

“I’ve had it! Enough is enough! Go take a shower.”

“No.” His hooded eyes hid their anger, even if it was clear in his voice. “I don’t have to answer to you.”

“That’s crap! I’m here with you–for you! And if that means I’ve got to bully and harass you into clean clothes and decent meals then that’s what I’m gonna do.” I crossed my arms [ ] and stood still, iron-willed and furious.

Yes, it sounds pretty authentic now that I re-read it, as does the rest of the chapter, which grows darker and is too long to post here. Of course, bathing isn’t my hubby’s issue. He’s fastidious about cleanliness, but is stubborn as Alec when it comes to doing what he doesn’t want to, like exercising. I’ve been told to go away and leave him alone several times.

Like Danny, I also relented when my husband decided to sleep apart from me… in the den. Danny’s Alec sleeps in another bedroom so she won’t disturb his sleep. My husband says he does it so he won’t disturb my sleep. PotAto Potahto.

I tend to write long, complex stories. I also know that a first time author should confine her story to a specific word count–well below my usual. I have, therefore, been cutting scenes that are more introspective and have less action and overt feelings in order to bring my word count down. I fear that by doing so, although I’ve captured some of the reality of dealing with a cancer victim, I may have short-changed Danny in the personal emotions department as well as in not enabling her to touch back to the memories of other characters dear to her. Time will tell.

As I continue to chart the journey my husband and I are on, I hope to see alignment with Danny’s and Alec’s journeys for accuracy and reality’s sake. If I don’t see accurate parallels, I can determine how to better align our emotions and actions to make my fiction as real and raw as my reality is.

Of course, there will always be a magical element in the fictional fight. That IS how and what I write. But who’s to say there won’t be a magical element in our reality as well?

When we last left our heroine and her not-so-helpful mate, he had, well, to paraphrase the line from a medical device tv ad, ‘he’d fallen and he couldn’t get up.’

The fall had dislodged the stent, which began leaking at the point of insertion. So, off we went to the hospital on Tuesday to have the stent checked. He fell getting out of my car, and was wheeled about in a wheelchair.

The stent needed replacement and the doctor did it then with a local to dull the pain. My husband was not pleased. As I’ve mentioned, he’s pain-phobic. He gasped and groaned all the way home and for hours afterward–even after I returned from taking my mom to her doctor’s appointment–but his pain turned out to be the least of our problem.

The doctor decided, since there was leakage in the stomach cavity, to vent the bile externally, through that tube part of the stent. The doctor preferred we leave it that way, emptying or changing the bag. He felt it was better going forward.

Well, going forward to sometime in the early hours of this past Saturday morning, we find our heroine being called around 6-ish in the morning. “What’s up?” I yell downstairs.

“We have a situation,” my hubby says.

“What happened?” I say as I hobble downstairs on sleep-numbed legs, leaning heavily on my cane.

“I pulled the stent out in my sleep.” The whole stent. He pulled the whole stent, which was attached to the external tube and bag, out of his body. Bile wept from the incision.

I called the IR resident on call. The short of it–the doctor called back within the hour. We determined that, since authorization was necessary for a “reinstallation” (hubby hates that term. Makes him think of tires.) and since doctor knew we’d be sitting in Emergency all day and possibly into the next trying to get authorization on the weekend, we decided doctor would call our insurance carrier for authorization on Monday and let us know when we were good to go–with, as hubby insisted–anesthesia. Turns out installation day was yesterday, Tuesday.

This left us with three days of a bile-weeping wound. What was the best way to contain it, since bandages soaked through in 10 minutes and the bile irritated his skin? It took only an hour to determine that the best way was not to bandage at all, but to absorb it with clean towels rolled into flattened tubes, wrapped around his torso from stomach to back, and changed two to three times a day, along with his shirts and sweatshirts. Lots of laundry, and luckily, I have a stash of bleached towels I keep for non-public display, well, actually, for bathing the dogs and mopping up clothes washer overflows.

Tuesday morning came earlier than I wanted it to, with my husband calling me from the kitchen. He’d fallen and couldn’t get up. We spent half an hour trying various scenarios–too low or high and he has no leverage. We tried chair seats, stools, a case of dog food. Nothing put him in a position where I could lift him. In the end, I had to call our neighbor, who came on the double and had my husband up on his feet in seconds. Heaven bless the man! I know we women have lower body strength, but it was upper body strength needed here, and I just didn’t have it.

After that, my husband and I arrived at the hospital bright and early–well, early-ish and in the pouring rain. He had to have blood drawn for testing prior to the procedure. I pushed him in a wheelchair to avoid another fall. The day was long. It usually is when he demands anesthesia as the wake up time, lengthy as a matter of course, seems more protracted with each procedure. This time, he was out of procedure well before 1pm, but wasn’t alert enough to leave until 3pm. He kept asking me how he got there. I’d tell him but he couldn’t remember. That part’s scary. Dressing took forever. He’s still very weak and required help to dress and to stand. Otherwise, everything went without a hitch.

My hopes were higher as we left the hospital, as we had the stent issue solved and we’ve finally stemmed the diarrhea tide. To do that, however, we had to stop both oral chemo drugs and put him on tincture of opium. It’s a small amount–0.6ml every six hours–but it works. Thankfully.

I keep saying he’s still very weak. Part of that is his doing. He refused the therapeutic vitamins meant to add muscle. He refuses to walk in the house or outside (for November the weather’s glorious–60s with strong sun), and tells me to leave him alone when I try to reason with him, but expects me to help him rise from couch or toilet as needed.

In the hospital yesterday, I met a woman whose husband was in remission from his myeloma. Her sister has dementia. She wept explaining her frustration at being pulled in two directions, then listened as I vented and cried as well. I’m not so weepy today, only frustrated that hubby won’t move more.

I’d hoped to do some sort of comparison with Danny here, but, although I know precisely what I want to say, I’ve gone on too long already, and will save it for tomorrow.

Will our heroine maintain her sanity until then? Will she coerce her mate into exercising? Or will he fall again? Will she push him down the stairs? Be sure to tune in, folks, to find out.

It’s now four days since my last post. I am somewhat calmer, though sinking deeper emotionally. I feel alone in this. He coops himself up in the den, swathed in down jacket and blanket, door closed, heater on though it’s in the upper 60s outside and the heat’s on in the house. He eats in there alone so as not be cold. It’s so hot that when the nurse comes he sheds everything but his light shirt. When a friend drops by, he laughingly asks if I have a towel for the steam room.

The raised toilet seat with arms that I ordered came as expected on Friday. I tried to remove the regular seat, but couldn’t get the nuts to budge. This annoyed me, as I value my independence, my can-do abilities and spirit. Still, he needed the seat so I called a neighbor-friend. He came, tools neatly arranged in some girdle-like appendage for his tool bucket that featured pockets outside the rim and inside, and quick-as-you-please had the old seat off and the new one on, much to my joy and irritation. My husband left his cocoon to see the results, and our neighbor pointed out that an extra gasket would make the installation more secure. Hubby went off to the basement to see if he had one. My husband’s tools are in no way as neatly kept as our neighbor’s, and, “As Rome goes, so goes the world”, his area of the basement is none too neat either.

So when he fell, it was no surprise. My husband, of course, couldn’t rise alone, breath pushed out of him, bloody lip, lying, panting like a fish out of water. Our neighbor went to help him up.

He was achy yesterday, and today, Sunday, and complaining that the stent hurts at the point of insertion and further was an irritated red, but then, that’s precisely what he fell on. I checked with the Intervention Radiology resident on call, who said if we needed to we should go to the hospital Emergency.

Upon rethinking his pain, my husband decided it was probably from the fall, and the pinching feeling was from the skin growing around the external tubing. After all, he’d experienced the same feeling after his stomach cancer surgery when skin grew around the drainage tube. (So, he can be introspective when he has to be.) The subtext to this conclusion is that he’d rather not sit in Emergency all day for what will be nothing. He hopes.

I’ll call the doctor tomorrow, not only to speak about the tubing pain, but to find another alternative to the ongoing diarrhea. Yesterday, he had fluids, all arranged by the doctor’s wonderful physician’s assistant and managed by a visiting nurse. My husband has been to the bathroom so often since then that he said he’s sure those fluids are all out of him already. This is really discouraging, especially after the grand failure on Saturday, when his diarrhea was so rampant he soiled himself, all his clothing, including his shoes, and left a trail through the kitchen that the dogs found interesting. While I was busy shooing them away and cleaning the trail up, he was miserably trying to shed his clothes, saying that he couldn’t take much more of this. It wasn’t worth it. That was disturbing to hear.

I keep seeing better days, though I’m aware things will most likely get worse–side effects of IV chemo and all–in the nearer future, and because of some strange turn of mind, I wonder with Thanksgiving around the corner will he abdicate his steam room to join us for holiday dinner or eat in solitary confinement? Or will he raise the thermostat and roast us all so he can be comfortable in the dining room?

And what about Christmas? I put our Christmas tree in the den. Must I forego that because not only would the tree die in 2 days of tropical heat, I couldn’t go in there to enjoy it. And that’s the thing about Christmas for me. I love the peace of the holiday, the twinkling lights and the memories attached to all those ornaments.

But those things are yet distant. I keep hoping for a miracle. More weight on his frame. Less output. Gotta hope.

I warred with myself over whether to write this blog post or not. I hate sounding weak. I hate feeling as though I’m whining or feeling put upon, abused or taken for granted, or look as though I’m beating him up over nothing.

But I promised an uncompromised look at this illness and its effects, and so here I go.

This week has, so far, been abysmal. Several bounced checks–the mortgage 3 times!!–had me charging to the bank to see how this could have happened. My checkbook is impeccably kept, balanced just as my mother taught me all those years ago. But it wasn’t the bank’s fault at all that the deposits weren’t noted in my statement. No. There was a glitch in the distribution process by the conglomerate that oversees our retirement funds. In fact, the usual funds had ceased to be deposited 2 months ago.

Long story short, by the time I spoke to my rep and got it all straightened out, I was shaking, and it wasn’t a caffeine jolt. The process has been reinstated. I have to check to see that funds are where they should be tomorrow and then I can climb down off my prickly cactus.

All the while, I’ve had my eye on my husband’s condition. Diarrhea comes and goes. Shall I call the doctor for a different med to try? No, he says. It’s not bad today–today being yesterday. But overnight, something happened. Diarrhea returned and, for some reason, he seems–no, he IS–weaker than he was and needs help rising from his couch and from the bathroom facility. THAT made him super cranky.

“I need one of those raised toilet seats, like the ones in the hospital,” he said this morning. “You may have to get one.”

“Now?”

“No. But if it gets worse, yes.”

“Let me know,” I said.

By early afternoon, evidently, it had gotten worse. He came raging from the den–his bedroom–yelling that he couldn’t go on like this, “shitting” himself. He wasn’t going to sit on the john all night, helpless, until I got up in the morning to help him get off, and I should buy a damn seat now. And then he disappeared.

I pulled out my tablet, found said raised toilet seat and wanted to order, but couldn’t show it to him because he was… where? In the basement.

After some thumping noises, up he comes, dragging a contraption built of 3 or 4 five gallon plasterer’s buckets.

I show him the model.

“No,” he says. I’ll use this.”

A bucket? He’s going to sit on a bucket? I was torn between wanting to laugh at the ridiculousness of the concept and wincing at how uncomfortable it would be.

Instead, I yelled at him. “You scream at me to buy a damn raised seat and when I find one, you say forget it you’ll use a bucket?!”

Evidently, the steam spewing from my ears and the flames from my eyes and mouth had him rethinking his position–no pun intended. “Well, How much is it?” he asks.

“Does it bloody f#^king matter??!” I roar, and turn to pull the roast out of the oven. No sense ruining a good dinner. I wonder now how blood rare beef figured into the argument.

Long and short of it, I ordered the d@mned seat. Rush delivery. Friday. Between now and then, he can bloody well sit on the bucket for all I care.

In my defense, I just checked my biorhythms. five of the seven are below 0. “Frailty, thy name is woman.” <sigh>

We had an oncology appointment last Thursday. The doctor was pleased that my husband was putting on weight, but I was more concerned about his inactivity.

“Should I bring him to a physical therapist?” I asked the doctor.

“No. No need for anything so regimented,” he said, and leaned forward in his chair as his attention shifted to my husband. “You walk about 1,000 steps a day, right?”

I burst out laughing. “He can’t say I’m lying, doctor, but all he does is lay on the couch and watch TV. Period. Activity? Walking to and from the bathroom and kitchen on the same floor. He sleeps in the den on that same couch rather than climb the stairs to the bedroom.”

The doctor was clearly surprised. Now came his prescription–walk that 1,000 steps. Lift 1 or 2 lb. weights or hold a baseball bat by its handle directly out from your shoulder and work up to 60 seconds for each arm.

To date, I have seen no change. In fact, he’s won the battle of the cushions. I’ve added the pale yellow living room couch cushions back to the den’s lower, leather couch to make it easier for him to rise.

He’s not lifting any weights, though he has a complete weight system in the basement. He’s not using the exercise bike in the den beside the couch.

He’s pretty much isolated himself in there. He’s cold, understandable with no muscle or fat on his frame, and runs an electric heater nearly all the time. He closes the door to keep the heat inside and lies there under two blankets. The dogs can’t enter his sanctum unless he gets up and lets them in. They’ve stopped trying to catch his attention, and follow me around like lost souls. I won’t go in the den because it’s like an oven in there. So no companionship–either for him or me. I’m feeling pretty isolated. Can’t speak for him. He seems fairly content to lie there, leaving the room only for bathroom breaks–diarrhea is still an on and off thing–and food breaks.

Is it mild depression? Or is he being stoic? I have no idea. He’s not a talker. I am, but it gains me nothing to spout what seems to be a monologue so I don’t, gritting my teeth and taking out my frustration by yelling at him. Not a good thing.

Even so, there’s a pile of clean laundry waiting to be folded. He could do that while watching TV. He agreed some time ago, but it was only lip service as the laundry’s been there over a month. (Yes. I can be quite stubborn too.)

“Move,” I said just today. “Get up and at least move your arms. Fold the laundry. You said you would.”

I’ve begun making him take the dogs out after dinner and before bed. He can at least walk up and down outside the front of the house.

I have no idea what else to do to make him move more. I’m frustrated and tired. I’ve taken on what household duties I can. I dismantled the garden last weekend, composting the plants, putting away the wrought iron fencing that surrounds my planting beds and keep the dogs out. I’ve turned off the fountain though I’ve yet to store it, and shut off the sprinkler system. I’ve yet to tackle leaf blowing and raking along the 100 ft frontage of our home. No idea when I’ll get to that. The patio awning is still up. He keeps saying he’ll call someone he knows to take it down, but so far, as with the laundry and the removal of the last air conditioner (I removed the 3 upstairs with the help of a young visitor), it’s just lip service.

Yes. I’m frustrated.

A dear former colleague has asked us to dinner this Saturday evening. I’m going with or without him. In my present state of mind, I’ll probably have a better time without him. That’s sad, but it’s also honest.

My husband lifts his shirt and asks me if I’d scratch his back. Each knob of vertebrae, every part of his shoulder blade, from the broad, flat plane to corocoid process to acromium, where it joins the collarbone, IS nothing but bone. There’s no muscle, no padding, just hard bumps, plates, and points.

Below that blade, his ribs stand out like a Halloween skeleton’s, obvious, a cruel reminder with everything else of the internal struggle. His back is difficult to scratch because my fingertips bang against those points and knobs, and bump along those ribs, falling into the depressions between them. Each vertebrae is its own war trench, alive with hooks and teeth that grab my fingers. It is both pitiable and repulsive. I close my eyes.

I want my life back. What I mean is I want all of this behind me. I want the quiet of mind that allows me to drift into imagination instead of the vigilance required as I oversee the distribution of his medications, the arguing over foods and drinks he wants and shouldn’t have. I want my mind busy with observation and research and writing instead of filled with the constant revolving list of medications and their schedules, and appointment dates and times, of careful diets, all blinking on and off inside my head.

But most of all, I want my husband back. I want the quiet, active man, the man who sees everything as glass half empty while going about his chores, his work, his life. I want the healthy man who took his cholesterol medication every day and went shooting every Sunday.

We arrived at the hospital at 10:30 last Tuesday so that the Interventional Radiology group could change my husband’s biliary stent at the agreed upon 11 am time. Unfortunately, emergencies and a doctor out sick meant that the time for my husband’s procedure was pushed back to 2:30 pm. He hadn’t eaten since Monday afternoon.

By the time he came out of surgery at 4 pm he was ravenous, and roaring about it. Thankfully, the angelic nurses in recovery brought him cup after cup of cranberry and apple juices and two tuna sandwiches. With his blood pressure rising, he was quieter, but still just wanted to go home. I couldn’t blame him. By the time we walked in our front door at shortly past 7pm, we’d spent just under 9 hours in hospital for a 90 minute procedure.

I was confident that his diarrhea would subside now that the bile was redirected to do its proper work in the intestines, but no. My husband, determined to have things his own way, began brewing his own tea and mixing it with orange juice to make an iced tea he remembered from childhood. Now, a minimal amount of any caffeinated drink isn’t forbidden when on chemo, but drinking it to excess–or in his case, drinking solely that–causes dehydration, and–you guessed it–diarrhea. He’s determined to be his own unwitting worse enemy, which leaves me on guard duty 24/7. It’s exhausting, and frustrating.

Having resumed the reins a few days ago, I’ve dumped out his gallons of iced tea, supplying him with Gatorade and straight orange juice, and renewed his Imodium regimen. The diarrhea is now under control. He’s not as gray as he was earlier in the week, and he’s feeling a little stronger… just in time to resume dosing him with the oral chemo drug that worsens his diarrhea. <sigh>

Our next doctor’s visit is on Thursday. At this point, I can’t begin to divine what he’ll say when he sees his patient.